Getty Owl Foundation

Bump! Set! Spike! (Hi, Miss Morgan!)

From Mark:

Getty has Olympic volleyball fever and misses her “big sissy” Miss Morgan, volleyball player extraordinaire, who is in a land Down Under for a while. Hi, Ms. Morgan!

Bump! Set! Spike!

SMA Awareness Month

From Kate:

On the first day of August, SMA Awareness Month, it would seem only appropriate to reflect on how life has changed for us or better yet, keep in perspective how life for anyone can change  in a moment.

Yesterday marked the 2nd anniversary of Getty’s diagnosis. And as fate would have it, I completely forgot. Not only did I forget but she had a pulmonology appointment in the same building, in the specialty clinic that she was diagnosed. And if I am not mistaken, the same room. So either I had not exceeded my daily intake of coffee to be alert enough to notice or I just didn’t even remember. You would think it would be a dark cloud hanging over us while the days got closer to that fateful day. But no, hadn’t given it much thought, and I think that speaks volumes to how we live our lives as a family.

What I did care about was getting her up in the morning. Getty is not the most willing participant in the morning, especially if she needs to be woken up earlier than usual. I hear the moans and grunts of a monster being awoken from her cave. I love laying next to her as she finally opens those beautiful blue eyes. I love being the first thing she sees in the morning. After the fluttering of eyes ended, this “monster” gave me a very cute smile and yawn. The day had officially begun.

Her appointment went great. Getty’s lungs sound great. At this time the settings on her bi-pap do not have to change to increase breathing support. Her weight is perfect and she is growing proportionally. Our giraffe is 36 inches long and 26.7 pounds. She giggled throughout our appointment with her doctor. I know that as I spoke to her doctor, Getty would quickly glance over at me, momentarily straying from Sesame Street to give me a “checking in” smile.

Who would have guessed that over 2 years ago we would be sitting in this office, speaking to specialty doctors about the #1 genetic killer of young children. Who knew that Mark and I both were each the 1 in 40 carriers of the SMA gene. Who would have guessed that we would have to become experts in everything related to SMA and in such a short amount of time. Every second of ignorance could potentially harm Getty and that was not going to happen on our watch. Who knew that as I spoke to her doctor today, it was almost like speaking to a colleague in the field. But this is our life and this is our new normal.

When Getty was diagnosed with Spinal Muscular Atrophy on July 31st, 2010, I instantly felt the walls of “supposed to” fall in an instant. I realized that at that point, this was obviously not going to be an easy road, but I did know that with this diagnosis came a sense of freedom. Disbelief, shock, denial, anger, etc. but in the same breath, we had the ability to write our own story. Mark, Getty and I had the ability to live life how we wanted. The burden of juggling life into the air and to be everything to everyone had become moot. What mattered most is Getty.

That kind of clarity continues to change Mark and I profoundly and in so many ways. SMA is a very scary disorder. Getty can be fine one day or moment and then the next you are trying to remedy everything you can to help find a solution to whatever you think may be happening to her. You can’t just call a night nurse and find a solution. SMA is not in the guidebook, and if it were it would probably just say: Neuro-muscular disease, lifespan 2 years, or something vague and dreadful. Ultimately it is on you to find a solution. SMA is also very nuanced. Every child is different, which can also have it’s own challenges.

We have almost lost Getty at home several times. There have been some very scary moments that have shaken us to the core. However, the moment it is over and she looks at us with such trust, you have no alternative but to bounce back and continue on. So if we were in the middle of reading a book, we finish it. If we were on a walk, we get to the duck pond, because that is where we told her we were going. If we were blowing bubbles, we better continue because she deserves to watch the bubbles pop on her nose, hands and legs.

So when I mention clarity, I mean it in the sense that life is so incredibly precious and it can be taken away in an instant. Something  so profound to learn 2 years ago. One  cannot control everything. As hard as I tried and as hard as I worked as a mother to make sure all went as planned, while the effort should be given a medal, the idea of control is feeble. All we have are beautiful moments with Getty that started as seconds, then minutes, that turned into days, that added up to months, and now years.

I had a very proud moment yesterday when Getty’s doctor looked at me, and instead of giving me the usual sad “how are you doing” look, it was, a celebration of how “awesome Getty is doing” look. Receiving that accolade in that moment felt reassuring that we are doing what is best for Getty and that she is thriving. I have not been holding my breath waiting for some positive feedback for the last 2 years, but it was nice to hear, regardless.

This diagnosis has never felt like a private. Private flew out of the window when we realized how many people have never heard of this SMA. It flew out the window when we knew there was hope and life to be lived with in a terminal environment. We hope we have shared enough about our journey to give those reading a window into what SMA looks like, how devastating it is for a family, how we need more warriors to spread the word about what we would consider a very prevalent and under-diagnosed genetic disorder, how we need a viable treatment, and how we need a CURE.

As a family and as a foundation we are trying our best to do what we can to spread the word, help families in need and raise funds to help find a cure.

Caring for Getty is a full-time job and that is where we choose to put our efforts. However she does sleep. 🙂 so when she is sleeping, that is when we work as hard as Santa’s elves to make phone calls, blog, write emails, etc. to do what we can. We are proud of the work we have done so far, but know that there is so much more to do.

We are fortunate to be in the company of so many incredible SMA families and SMA non-profits that are fighting against SMA as well and have been steadfast in their efforts far longer than we have. Let’s just say that SMA has a lot of enemies. 🙂

In commemoration of SMA Awareness Month, in honor of our daughter Getty and all angels and warriors of SMA, Getty Owl Foundation will be donating $10,000 to the Gene Therapy Program at Nationwide Children’s Hospital at Ohio State University. We believe in this program and their promising progress. We are just so thankful for the support of others to be in this position to be able to donate.

SMA needs to end. For Getty’s sake and for all human beings affected by SMA. They all have way too much living to do then to be held back in any way by SMA.

So in the month of August could you:

Help spread the word.

Come to an August event.

Put on your running shoes.

Make a donation.

Here’s the August Scoop Part #1

From Kate:

August is coming very soon and I wanted to get some really exciting news out and fill everyone in on what events will be happening to help spread SMA Awareness, since August is National Spinal Muscular Atrophy Awareness Month.

Every day seems like that for us over here, but for those that might not know about the #1 genetic killer of young children, we really try and hit it hard this month in particular.

I can’t tell you how great it is to educate people about SMA. I know people are not racing to their doctor to get carrier tested, I am sure that the very next conversation someone has after seeing us is probably not about SMA, I am sure people do not race to their computer to look up our website to find info about SMA. But it does feel good that those three letters, S M A is getting out there. And for this month, in particular we tried to find great activities for people to attend so they didn’t feel like we were stuffing SMA down their throats, but rather being advised and then they can decide what to do with the information.

So carrying on with that thought. We will be having the 2nd Annual Hoot the Grid, on Saturday, August 11th, hosted again by the very generous, AJF Salon. Adam and his team have been so gracious to us for the past two years, we are really looking forward to working with them again.

If you would like to see check out last year’s event, go here.

Our intent with this event is to put a face to SMA. Children and adults that live with this disorder are incredible human beings. They are warriors that make a difference in this world, and they make some incredible art. Their families and friends who support them and honor them also are just as heroic, and create amazing works of art. The artwork comes from all over the US with a couple from our very own resident warrior, Miss Getty.

Over 50 pieces of art will be framed and displayed throughout the salon and will be offered for sale.

Along with the art, there will be a silent auction for people to bid on.

This year we have added live music. We are so excited to have Singer/Songwriter,  Clemon Charles to be a part of the event.

Complementary wine by Cupcake Vineyards, beer by Hoppy Brewery, and dessert will be available, as well as non-alcoholic beverages.

This event is open to the public. Adults and children of all ages are encouraged to come.

Last but not least, we will be offering event t-shirts for $5.

Last year we did an Owl Scavenger Hunt. While it went well, we felt that it confined our participants to a certain time frame. So this year we are doing things a bit differently.

From 5-9pm, you can come by AJF Salon and we will give you, your t-shirt, bracelets and SMA Fact Cards to distribute throughout the 2nd Saturday Artwalk. Hopefully that gives people more flexibility to pass out information and also get back to the salon with plenty of time to buy some art, have a beer and cupcake. 🙂

So to wrap up here are facts:

2nd Annual Hoot the Grid

Saturday, August 11th

5-9pm: Volunteers for SMA Awareness Walk. Stop by AJF Salon first to get your shirt and SMA stuff, shirts $5. Deadline for t-shirt order is next Monday, July, 30th.

7-9pm: SMA Awareness Art Auction @ AJF Salon.

We would like to thank all of the sponsors for making this event possible.

All proceeds benefit Getty Owl Foundation. Last year we raised over $5,000, which is simply awesome!

We hope our 2nd Annual is just as exciting, inspiring, and worth everyone’s Saturday night.

If you are interested in buying an event shirt or have any questions, please email me at hoot@gettyowl.org

Till then,we hope to see you there.

Updates About Getty

From Kate:

It has been a long time since I have really updated on Getty’s health, her activities, her everything. So I wanted to update for the sake of updating.

In a nutshell things are good. We are very blessed to have a vibrant little one that just overwhelms us with love. Her will as such a strong fighter amazes us everyday.

Since Getty and I are “roommates”, she has gotten very good at letting me know when she is awake or if she needs repositioning. Since she lacks the ability to roll over on her own, she let’s me know when it’s time. When she was younger it used to be a little whimper. Now it is a full on yell. She does not mess around. I used to just hear muffled noises, but if I listen very carefully she is saying, “MOM!”. If that doesn’t get me out of a sleeping stupor, I don’t know what does. I am so thankful she can be so verbal with me and I also love the demanding part of it as well. 🙂

Usually she only needs a few repositions throughout the night, but lately has seemed like every other half and hour she would yell at me. I was trying to remedy that as quickly as possible for her sake and for mine. Before she had needs like this was because she had bananas in her diet, to which is now is a huge no, no. So since I had not added anything new, I couldn’t figure it out. Until after many wonderful SMA mommies mentioned is she hot? Here I was in the middle of summer putting all kinds of clothes on her. Duh Kate!

So I stripped her down to her skivvies  and guess who slept awesome? Another lesson learned. Who knew she loves being naked. 🙂 Our kids also have a hard time regulating their body temperature, so while our house temperature is set at 67 degrees, she can still be very hot. So since the nakedness, we both have been sleeping a lot better. She only yells me about three times a night, which I appreciate.

Getty’s diet continues to do wonders for her. Again, I am not sure where her health would be if we had not made that switch. I know for a fact she would be overweight, breathing way too hard and tiring herself out, immune system would be shot and we might be seeing the doctors more. As it stands and if everyone can knock on wood, we have not been back to the hospital. We see her doctors on a quarterly basis and sometimes bi-annually. Depends on why we are there and who we see.

Getty has a new pulmonologist and we are still doing the “do we trust you” dance. So far she has been pretty open to our knowledgeable and assertive craziness. Other than that, most of our correspondence has been through email with all of her doctors.

Most of the time when we do go for an appointment, it is for blood draws. And so far her metabolic levels have been great. We check for all kinds of things, I wont bore you with all of the labs, but again, Getty is a trooper. As long as the iPad is on, she hangs out and seems to not care that she is getting blood drawn. Last time we were there, the lab tech that was drawing her blood said in astonishment, “doesn’t she cry?” And I responded with, “no, if Elmo is on, the world does not exist.”

Getty received a new TSLO (chest brace) from Shriner’s. She simply grew out of the last one and we wanted to get another kind of brace this time that was both custom but also stronger to keep her upper body in line. It has proven to be great for her. She looks more stable in her stander and that is what we were hoping for. We thought she needed updated AFO’s (ankle braces) but it turned out that she just needed to be remolded a bit.

Getty uses a bi-pap machine when she sleeps overnight and for naps and so far, her settings have not needed adjusting.

I think you could consider Getty non-verbal. She makes tons of noises and coos, but the formulation of words is still in the process stage. Her words are often muffled. But we are finding that when we ask her to mimic us, she will, but with her own sound. Her actual words will come out sporadically. She has enunciated “dada”, but when we ask her to say, “dada” she clams up. 🙂 There was one day when I was in the office and Getty was with Angie in the living room and she said “mom” a few times, to which I cried my eyes out. We also said, “all done”, and she came back with “ah dun”. So hearing Getty progress is awesome!

I can’t help but attribute this increased verbal communication to her new teachers. The school district have in home teachers that come to play and communicate with Getty. It is awesome! While they are here, I stay out of the picture, but just close enough to suction if need be. But she loves them and I know it is helping with her verbal skills. Mark and I have just grown so accustomed to doing everything for her that I know she knows she doesn’t have to say anything to get what she wants. Something that we both need to work on. But with her teachers she needs to respond, and it is so awesome watching her interact with new people.

Now we are having to weigh out the pros and cons of having them come during RSV Season. We are still working on that decision, but in the meantime she is loving it and I don’t want to remove these experiences from her. They aren’t mommy and I think that is what Getty needs right now. I am always, “up in her business”, and I think she is getting to an age where she wants to explore with new people.

Getty’s garden is growing leaps and bounds. Her victory garden has gone from little spindly flowers and vegetables to  a mass of beautiful flower, full of color and growth. Her veggies have almost taken over the whole backyard. Pumpkins, tomatoes, cantaloupes, corn, you name it, it is growing out there.

Getty is enjoying watching Sesame Street, like a lot. She loves the songs and Elmo. That voice of his makes her smile and also mesmerized at the same time. Mark and I are a bit “over” Elmo, but it sure makes her happy. She is also enjoying Super Why and Thomas the Train. Those two we actually enjoy watching with her. 🙂

Getty is growing leaps and bounds. She is now fitting 4t clothes. She can still fit 3t, but it is a snug fit. I can’t believe how big and long she is getting. We have a giraffe on our hands.

So those are some updates about Getty. We are just so thankful to be updating on her progress. She is such a little lady and in the same breath, such a ferocious fighter. Everyday is an absolute gift.

This Saturday, Sacto MoFo! We Will Be There!

From Kate:

Sacto MoFo is a well known event and organization that “circles the wagons” with gourmet trucks full of great food and drinks for the whole  family. This Saturday from 11-7pm under the freeway on 6th & X Street.

Getty Owl Foundation’s booth will be there to distribute SMA information and giveaways. There will also be some of our GETty Crafty, craft vendors there to add to the event. Here is a sneak peek at some of their wares.

So come on by and stay for some awesome food and drinks, live music,  stop by our booth and give Stacey a “high five” and buy to your hearts content from some very cool GETty Crafty vendors.

See you Saturday.